A B.C. team will co-lead Canada’s largest-ever effort to improve care for people with kidney disease. The initiative aims to reduce the number of people who need dialysis or organ transplants, or who develop related illnesses that are debilitating or deadly.

The five-year, $59-million initiative is Canada’s biggest investment in research to improve care for people with chronic kidney disease. The condition affects one in 10 Canadians, at a cost to the health care system of over $50 billion a year. It will explore various fixes:

Broader screening, especially among indigenous people, who are more at risk of developing chronic kidney disease;

Potential biomarkers that enable earlier diagnosis and predict who is at most risk for kidney failure;

Drugs or stem cells that could slow the disease’s progression;

Education about proven strategies for diet and water consumption; and

New ways of providing care, especially for people who live far from kidney specialists.

“Until now, we haven’t been able to muster the resources and organizational leverage to focus on the vast numbers of people with early- and mid-stage kidney disease,” said Dr. Adeera Levin, head of the division of nephrology at the University of British Columbia and executive director of the BC Renal Agency, an agency of the Provincial Health Services Authority.

“This grant is really a first in recognizing chronic kidney disease as a significant health problem, but one that holds so much potential for improvement for patients,” said Dr. Levin. “This can be a model for how we approach other complex chronic diseases.”

The Canadians Seeking Solutions and Innovations to Overcome Chronic Kidney Disease Network is a national partnership centered around patients and involving all key stakeholder groups: patients, caregivers, health practitioners, policy-makers, and researchers. Dr. Levin, who is also a consulting nephrologist at St. Paul’s Hospital, a scientist with the Centre for Health Evaluation and Outcome Sciences, and president of the International Society of Nephrology, is leading the project with the University of Calgary’s Dr. Braden Manns.

The Canadian Institutes of Health Research, through its Strategy for Patient-Oriented Research, awarded the team $12.5 million, while 30 other organizations – including the Kidney Foundation of Canada and the Canadian Society of Nephrology – provided $46.5 million in funds or in-kind support. Several other Canadian universities are participating in one or more of the projects, and people living with kidney disease are participating in the projects’ design, management and follow-through.

“The researchers want to know what patients need, and have put patients and their caregivers at the forefront of this initiative,” said Kate Huffman, a kidney patient from Coquitlam, B.C. and co-leader of the initiative’s patient council. “This is something that has never really been done before with kidney disease – it’s a new way of doing research that could make a huge difference for people living with this condition.”

The funding from the Canadian Institutes for Health Research was announced today as part of a $62.25 million investment for five health networks to address chronic disease in Canada by the Honourable Jane Philpott, Minister of Health. UBC is also involved in a project to improve the health of children born with developmental disabilities, based at McGill University, and another focused on diabetes and related conditions, led by Toronto’s University Health Network.

One clinical trial will test stem cells that have been shown in animal models to improve kidney function; another will examine drugs used for diabetes and arthritis that also hold potential for treating chronic kidney disease.

Other projects will explore changes in care delivery. One study will provide family physicians and their patients with information about an individual’s risk of developing chronic kidney disease, to see if more information leads to better outcomes. Another team will assess patients’ preferences in dealing with their health care providers, including their willingness to use technology to communicate with physicians or even to partially manage their own care using software.

The initiative also will try to improve the “last resort” therapies of dialysis, in which a person’s blood is regularly cleansed, and organ transplantation. One project will test whether certain drugs or other treatments can reduce itching and restless leg syndrome, which are common side effects of dialysis. Another project will explore ways of streamlining the process by which people voluntarily donate one of their kidneys.

About chronic kidney disease

Chronic kidney disease is an umbrella term for dozens of different conditions that weaken and sometimes destroy an organ with several crucial functions: removing waste products from the body, maintaining a proper balance of fluids, releasing hormones that control blood pressure, producing vitamin D and controlling production of red blood cells. Some forms of chronic kidney disease can be diagnosed as early as birth; in other cases, it doesn’t appear until late in life. Heart disease and diabetes are two of the most common causes.

Despite the prevalence of chronic kidney disease, the most dramatic advances in care – dialysis and transplantation – have been limited to the small fraction of people whose kidneys ultimately give out. Many more people live with a less advanced form of the disease but still in a weakened state, relying on medications to lessen the symptoms and long-term effects, and often developing heart disease (the major cause of death of people with kidney disease), bone disease, high blood pressure and nerve damage.

Despite the need for more knowledge about kidney disease, nephrology has the lowest number of clinical trials of any other medical field, and people with chronic kidney disease, due to the complexity of their illness, are usually excluded from studies of heart disease and diabetes.

The BC Renal Agency, an agency of the Provincial Health Services Authority, plans and coordinates health care services for patients with kidney disease in BC. We work with a province-wide network of renal care providers, supporting new initiatives, research and education with a goal of improving the quality of life for those living with kidney disease.

Providence Health Care (PHC) is one of Canada's largest faith-based health care organizations, operating 16 health care facilities in Greater Vancouver. PHC operates one of two adult academic health science centres in the province – St. Paul’s Hospital – performs cutting-edge research in more than 30 clinical specialties, and focuses its services on six “populations of emphasis”: cardio-pulmonary risks and illnesses, HIV/AIDS, mental health, renal risks and illness, specialized needs in aging and urban health and is home to the B.C. Centre for Excellence in HIV/AIDS. www.providencehealthcare.org.

The University of British Columbia (UBC) is one of North America’s largest public research and teaching institutions,and is consistently ranked among the world’s 40 best universities. Surrounded by the beauty of the Canadian West, it is a place that inspires bold, new ways of thinking that have helped make it a national leader in areas as diverse as community service learning, sustainability and research commercialization. UBC offers more than 58,000 students a range of innovative programs and attracts $519 million per year in research funding from government, non-profit organizations and industry through over 8,000 projects and grants.

I am writing to express my gratitude and appreciation on behalf of my family and myself. My mother is 96, going on 97, and I am under no illusions that she has much time left on this earth. Our family would like for her final years to be spent as comfortably and peacefully as
possible. After much searching, we decided to entrust our mother to Langara based on the high quality facility, staff, and reputation, and to this day, we have not been disappointed.
”